Need help with explanations of late stage chronic lyme and herxing

Hi, I am new here. I wont go thru ALL the details of my 5+ year battle with illness, starting with small fiber neuropathy, a serious case of C-Diff, and ending in a psych facility.
Towards the end I had days of total neurological breakdown; cognitive, speech etc. I became unable to work, drive or even go for a walk for fear of losing my way.

My integrative md never gave up on me. She had done an Igenex test which showed only IGG 41 positive. I also have lifetime autoimmune issues. Low IGG and IGM levels as well as others.

She has recently been training with a very respected lyme specialist. She was at a seminar of doctors and presented my case, which had been up till then undiagnosed. I had neuro issues, gut issues, neuropathy issues, migraines etc. After the seminar the lyme specialist went up to her and told her I had lyme.

We are doing another Igenex test, but in the meantime she started me on the antibiotic treatment - doxy and Bactrim. I was never warned about "herxing"

Within a week I was as bad as when they put me away. My doctor was actually glad that I was herxing, as it was another step to confirm the lyme. - Late stage chronic lyme at this point with other issues

Here is my problem. I spent 5 years going to 20 different doctors all who had different theories of my illness. My family began to think all the doctors where whacked and maybe I was indeed as well. Now I believe I am finally on the right track. With the herxing I am a total wreck. I can't watch my grandson or do much of anything. Dr. started pulsing the drugs to lessen the herx. I take all the detox supplements but sometimes the herx is still really bad. The fatigue is overwhelming.

How do I explain to my family after all I have been thru, that lyme is the culprit and the herxing is a good thing, and I MIGHT get better. I have searched but cant find any literature on what to give to a family to explain what the patient is going thru. One day I can talk and the next I am slurring speech. Some of them still think this is a wild goose chase and I cant even talk to them about what is happening with me. That in itself is very depressing (on top of the depression with herxing).

Any suggestions?

Hi Spkar,

Welcome! I'm so sorry you are ill, but I am glad you were able to find us here. Knowing that other people are going through the same experience is very healing! We are here for you :)

Have you checked out the thread at the top of the page that says "New To Lyme? Start here!" There is a cache of great information in that thread.

People DO get better from Lyme! It's not an easy road by any means, but it can and will happen. It takes time.

There is a great documentary out there called "Under Our Skin" that explains Lyme. I've gotten many friends and family members understand my situation by having them watch the movie. There is a full length version on YouTube, just search "Under Our Skin".

I'm sure you miss your grandson. Can he visit while he is with a parent?

Keep posting, okay? We are here for you! Hugs!

Thank you for the info on "under your skin". That is me wrapped up in everyone. The thought of getting my brain back is very encouraging as tough as this process is. I will definitely share this with my family.

How about some explanation as to why we can go from feeling ok (ok is the best I have had in years) to being bedridden in a matter of minutes. That one is tough to explain too. Sometimes people think I am using it as an excuse. Not enoughninfo out there for both patients or non.

Great link, Summersun!! Thank you! I've added it my list as well!

Traveler and spkar - So glad to hear you found the link helpful. I know I did when I found it!

Traveler - I am thrilled that you will pass it on - hopefully it will help others too.

spkar - you are so NOT alone and you are definitely NOT crazy. It's wonderful that you found this forum. You're in the right place to gain understanding and support. There are so many wonderful people here.

It's all about stress levels, especially for us. Times of higher stress (whether we feel it or not), will lower our immune system and give the infection the 'upper hand' with symptoms and with it spreading in our body.